Monthly Peer support is vital……

Yesterday I was back in York for this months meeting of York’s ‘Minds and Voices’ – a DEEP affiliated group for people with dementia. There sadly isn’t a peer support group in the East Riding so I still have to go to York for support.

It was a cool but sunny morning as I set off early from Beverley. The buttercups on the Westwood are still looking amazing – a perfect habitat for the towns roaming cows….

The buttercups on the Westwood have been amazing this year....

 

I arrived in York in time to chill out and amble by the river.

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I wished I still lived in York on days like this – until the ambulance when by with its siren blaring, which brought me back to the reality of this beautiful yet noisy city…………

Damian had kindly agreed to pick me up from the railway station, otherwise I wouldn’t be able to get to the venue easily.

I seem to be having more and more trouble with ‘time’ lately. Numbers confuse me if my brain isn’t quite in sync. Last night it took me ages to work out what time to set my alarm and I ended up setting it wrong and having to work it out again. I had to ring the taxi people to check what time I’d booked the cab. It had also taken me ages to work out a train route earlier in the day – trying to work out the times had caused much confusion. But I got there on all counts eventually. Working out the ‘time’ of things just now takes more ‘time’……….a new experience…..

We got to the hall and Emily was waiting with a cuppa – perfect timing………….
Within a few minutes everyone had arrived and we were off…………..

Today we had a full house along with 2 visiting speakers – we even had to go and get more chairs …..

Irene – Dementia support worker for ‘Making Space’ based in Scarborough had come to find out how we work. She is looking to set up a group in Scarborough and wants to include people from the remote villages so is looking at other ways to invite people to join in, for example, via Skype or FaceTime.

Eric from RICA – Research institute for consumer affairs -had travelled up from Brighton to speak to us also. RICA is a branch of ‘Which’ magazine, and had come to see if we’d be interested in being part of some research they’re doing.

Emily started off the meeting with us all introducing ourselves as we had a new member today, which is always nice to see. Emily then went onto say how Dementia Action Alliance in York has asked if we’d like to have a member on the Steering Group for York, led now by Janet Dean – I think I know Janet from Twitter! Emily decided that we’d maybe take it in turns to attend the meeting…..👍Not sure I should volunteer for that one as it’s York😏

Eric then spoke – RICA will be working with 9 DEEP groups looking at experiences of people with dementia as consumers. People with disabilities are often ignored.
It’s been funded over 3 years to engage with 9 DEEP groups. 9 projects – 3 per year – an example of a national project was a British Gas project, asked to advise on colour choices and instructions behind one of their devices. Local ones are centred around the local environment – Going to local Bingo hall – people with dementia had often been to Bingo but then struggled once dementia impacts. This project is wanting to find out how Bingo halls can help people with dementia continue this often important social get together.
Irene from Making Spaces then talked about the reason she was here. They plan to set up a central group in Scarborough but they aim to have Skype access for people in rural communities to join in. They aim maybe to go to places that already have Internet access so that people don’t necessarily have to have Internet access themselves –e.g. Libraries – to enable Skype or FaceTime – where access will be reliable and where there are people there who would be willing to help. She wanted to see how our group worked and the different type of people who attended.Well we certainly have a variety….😀

Lunchtime was a nice affair and we went for a walk afterwards which meant there was time for a photo call……..

The wonderful motley crew....
The wonderful motley crew….

In the afternoon we talked about the email that had been doing the rounds to ‘Help test new Dementia Citizen apps’. I’d already signed up and my app arrives on Friday to test for 2 weeks.

We then revisited our ‘ownphone’ – a voice recorder for our views that is run by onourradar. It enables as many people with dementia to voice their views whilst they’re fresh in their minds. The recording by magic arrives at the charity and they record it on their website – http://www.onourradar.org/blog/projects/dementia-diaries/
Damian told us about the launch of the West Yorkshire playhouse booklet re dementia friendly theatre and how they’re putting on a performance of ‘ Strictly Ballroom’ as their next ‘dementia friendly’ performance in 2017 – so we’ll book for us all to go……yeh!

We seem to cram so much in to the session that before we knew it, it was time to leave.
I got confused again with the time of the bus I was getting – what’s going on with ‘time’!! Luckily Emily told me, and I was back on track again. It’s very disturbing and frustrating when dementia throws something new at you……
It was such a long day but soooo worth going – there’s nothing better than peer support…..thank you Emily, Damian and Lorraine for being there……

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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